Tuning In to Your Ultradian Rhythms

The struggle with energy (or lack of it) is an integral part of life with ME/CFS. Whatever other symptoms each of us deals with, the ongoing energy black hole and knowing when and how to use what little oomph we might have safely, is a conundrum we all grapple with, often without success.

During the times when we just don't have anything to spare beyond breathing and the most basic thought processes, the quandary of how to use energy is irrelevant and out of reach. The question sticks its tongue out at us in derision.

For some of us though, there are times when we have a little extra energy. The temptation is to use it up getting some of the things done that have been amassing like a dusty pile of old newspapers.

We take the dare and spend an hour on the things that have been frustratingly out of reach. We enjoy the wind in our hair, trying to live a slightly more normal life ... and we crash. That hour can ultimately cost us the next two days, or weeks or months as we are flattened on our beds once more.

How, we wonder, with the few synapses in our brain still functioning, will we ever overcome this roadblock to real life? For several years I had no answers to this question.

For this reason, when I encountered the concept of ultradian rhythm it really caught my attention. Ultradian rhythm is not a term that is wellknown. And those who have heard of it may only be familiar with ultradian rhythm as it relates to REM sleep.

The U.S. National Library of Medicine, National Institutes of Health (PubMed) has this to say about ultradian rhythms. "The hypothesis of the Basic Rest Activity Cycle (BRAC), that underlies approximately 90-min fluctuations in states of consciousness, has gained strong documentation during sleep in cyclical occurrence of its REM and NON-REM stages, however, there is no convicting evidence of this rhythm in waking."

With all due respect to PubMed, I decided that if I could apply this to my waking hours as well, I wasn't going to let their lack of validation for it stand in my way.

An ultradian rhythm is any biological process that occurs in less than 24 hours. Every day, we cycle through ebbing and flowing routines that are regularly scheduled by the body.

It makes good sense for the body to do this. Up and down phases help to regulate everything from blood flow to brain wave changes, to hormonal secretions. These rhythms help the body to function properly, lessening the occurrence of autonomic dysfunction. Put simply, after 90 minutes or so of being active, our bodies prefer to rest for the next 20 to 30 minutes.

When I read about this natural predilection of the body to rest at regular intervals through the day, I paid special attention to it. This was at a time many years ago when I was either in bed, on my way to bed, or feeling like I was going to fall down and wishing I was in bed.

I didn't need to be convinced that I had a powerful need to rest. I was intrigued by the possibility that I might be able to work with my ultradian rhythms and perhaps experience some healing -- or at least not feel quite so crappy all the time.

I had up until this time done the usual ME/CFS thing. On the rare occasions when I felt less than decrepit, I would try to make the most of it. Get some laundry done. Go for a walk. Do something with my husband or with the kids.

That never worked out very well, I don't have to tell you. I'd get drilled into the floor afterward in a tremendous crash, and would end up far worse off than I'd been before that one magical afternoon of activity.

The ultradian rhythm suggested that there might be a way to ease into things. And for me, it has worked out that way.

I need to say loud and clear, that this is not going to be the case for everyone, in every stage of ME/CFS fragility. And it may work for you during one season but not in another. We all experience a lot of variables, a lot of x factors that determine when we can do ... well, anything ... and when we cannot.

There have been times when I was just too darned sick to even consider trying to be up for even a few minutes, let alone 90 of them. Other times I was well enough to be doing something for 10 or 20 minutes, then the warning signs began to signal that it was time to get horizontal.

So keep all this in mind and don't get yourself into a ditch over it. As ever, you must judge for yourself how you're doing. Listen to your body with the utmost respect. Ignore everyone and everything else that tries to tell you to get up and moving when you know it's just a bad idea.

To me the main thing was that it might be possible to do a bit through the day without having to land on my face. The rest periods were key. I hoped.

And for me they have been. As with most things ME/CFS improvement does not come in a straight line, often after three steps forward, you go two steps back. For that matter it's not uncommon to go two steps forward and three, four, or five steps back. Once again I'm not telling you something you don't already know. I just want you to be assured, that I know it too.

So on the days when I felt able to get things done, even if I still felt fine after an hour or so, I would make myself stop. I would lay down with a book, or curl up and go to sleep. I would make sure to do this for at least 20 minutes whether I felt like I needed it or not. If I was feeling worn out, I would lay low till I felt better, and if that took more than half an hour that was fine too. Sometimes I'd sleep for hours afterward. Also okay.

I've recovered (or am in remission, or whatever term you are more comfortable with) quite a bit since then. I'm able to work full-time online. There's not a lot more besides that going on in my life but compared to six years ago for instance, this is no small deal. And I am able to take my dog for a walk every day, cook meals, do laundry, go to the store or the library without symptoms.

I wouldn't try to say that tuning in to my ultradian rhythms has made the big difference. But I am convinced for myself that it has made some valuable difference in my ability to regain some life again. And I still follow it loosely.

I never try to be on the go all day long. I make sure to take breaks. And when I am overwhelmed, and the rushing starts in my ears and the numbness appears in my face and I feel like I am vibrating and can't think ... as soon as possible I find some place to set aside and rest. And 20 minutes will usually make a big difference. Enough to be able to carry on. At least for another 90 minutes.

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Thanks for sharing and for the links Jody. I've found pre-emptive resting to be quite beneficial for increasing my overall up time too. I haven't heard of the Ultradian Cycle, but it sounds interesting......need to check it out.

Problem is, even after 20 years learning this lesson, I'm terrible at making myself stop when feeling good, better. Another problem I have with this is that the stress boundary is not constant. It's often unpredictable. Also for me, crossing the anaerobic threshold is only one of many ways to cause a crash; watching my pulse rate just isn't much of a tool. I've found the best tool to be listening to that internal voice telling me to stop, which is always well before I intellectually believe it necessary.

There are so many cycles within cycles within the body that i think are out of whack and not in sync or too low or too high. Circadian rhthym with melatonin, cortisol rhthym, other hormones are rhythmic too and also neurotransmitters are involved as well as counter balancing each other like dhea and cortisol or insulin and glucagon etc. I think this is why many experts have mentioned cfs/me is not only immunological/infectious but also neurological as the hypothalamus etc control many of these functions and help co-ordinate them. I also think this is the reason why there will be no one hit wonder but more of a number of treatments are going to be needed to treat this dam thing.

Thanks for sharing and for the links Jody. I've found pre-emptive resting to be quite beneficial for increasing my overall up time too. I haven't heard of the Ultradian Cycle, but it sounds interesting......need to check it out.

Problem is, even after 20 years learning this lesson, I'm terrible at making myself stop when feeling good, better. Another problem I have with this is that the stress boundary is not constant. It's often unpredictable. Also for me, crossing the anaerobic threshold is only one of many ways to cause a crash; watching my pulse rate just isn't much of a tool. I've found the best tool to be listening to that internal voice telling me to stop, which is always well before I intellectually believe it necessary.

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Hi Tristen

I know what you mean about the other variables that keep life messed up. It's funny how our brain often will deny what our body tells it, that it's time to regenerate, that the energy is used up ... If you are able to tune in to, and obey, your body's inner warning system, that is the best.

There are so many cycles within cycles within the body that i think are out of whack and not in sync or too low or too high. Circadian rhthym with melatonin, cortisol rhthym, other hormones are rhythmic too and also neurotransmitters are involved as well as counter balancing each other like dhea and cortisol or insulin and glucagon etc. I think this is why many experts have mentioned cfs/me is not only immunological/infectious but also neurological as the hypothalamus etc control many of these functions and help co-ordinate them. I also think this is the reason why there will be no one hit wonder but more of a number of treatments are going to be needed to treat this dam thing.

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Hi heapsreal,

Agreed. I don't think there is any one hit wonder either. The more pieces of the ME/CFS puzzle we can put properly in place, the better off we'll be.

I sympathize. It's been awhile for me but I remember what that is like. I'd take the basic premise of the ultradian rhythm and cut it up to suit me. After I'd been in a crash for some time, I would spend maybe a minute or two doing something. Ready to just toss it if I had adverse reactions. Any increase would be no more than a minute or so at a time, and increases would never happen one day after another.

But when I was really sick, such things were the furthest thing from my (non)mind. Then I did the only thing I could do. Rest. Sleep. Breathe.

There's an ME/CFS saying I heard somewhere -- Why stand when you can sit? Why sit when you can lie down? That was my motto for many years. It had to be. So why feel embarrassed about it -- embrace the truth and do what works, right?

Don't ever try anything just because somebody else (eg. me) suggests it. Even good things can be poison in the wrong setting. Leave it all for later.

Thanks for the kind reply Jody. It sounds like you are using a resting method comparable to the old 15 minutes activity then 45 minutes rest regime but with a much longer activity and much shorter resting period.
Even at my most active (well for the last 20 years anyway) I've never been able to have an activity period that is longer than the resting period.
Glad you found something that works for you.

Thanks for the kind reply Jody. It sounds like you are using a resting method comparable to the old 15 minutes activity then 45 minutes rest regime but with a much longer activity and much shorter resting period.
Even at my most active (well for the last 20 years anyway) I've never been able to have an activity period that is longer than the resting period.
Glad you found something that works for you.

Thank you, Jody, for a very helpful article and reminder. I want to try to keep my head above water enough to be disciplined like this, following the inner cues (which I have but usually ignore). Now in my "declining years" with ME, I find I am becoming more compulsive. My guess is that this is the brain's back up system for motivation. It comes from my desire to be efficient, productive and competent. I want to be normal and get things done! So I bypass those signals telling me to stop an activity, to rest, slow down or do something else. I go with the warrior ethic, the strong, persevering ethic I was schooled in, and as we know, end up hurting myself. Then, seriously out of balance, I make some other messed up judgment or decision. Until I rest enough, this is what happens. I have also had accidents and injuries as a result of pushing. You'd think I could learn. Well, this community talk and discussion really helps. Because to bring all this into a social context for ourselves makes our issue and need much more solid and real. Thank you again!

Along with this rhythm of rest and activity, there is another way to combine the two which I actually do, and which helps me get by. I let my brain slow down and be dreamlike with whatever I can during the day, coming alert only as necessary. I have learned to do this floating drift. It was frightening to be like this when I first got ME, to be half asleep during the day, but gradually I adapted to it. Maybe it is analogous to becoming a fish swimming in the sea instead of some bright, alert land animal! People have told me I am so calm and peaceful. That is not how I would describe myself, but they are seeing the quiet, slow brain pace I operate in much of the time. What wears me out fast is when I have to keep up with normal to fast, or intense people and conversation. I can only do normal speeds for short periods.

I know, it's not easy to go against everything we learned before we got sick. It's hard to slow down when everything else is going full tilt in the world. I think too -- at least it was this way for me -- I had become so let down and disgusted with my body for its failure to function that I did not respect what it told me and did not want to listen to it. As if it were a lazy irresponsible child giving me excuses for why it should not or could not do what they were told.

I understand the warrior thing, I have had to unlearn, or perhaps re-structure that as well. The wise soldier knows when it cannot win. The soldier who is also a survivor knows when to cut losses and retreat -- in order to be able to fight another day.

Disciplined resting is something that I have had to learn and relearn ... and relearn ... One of the reasons it's important to talk about, I think, is that it can be hard to do, and to keep on doing. So even though we all know basically the same thing -- that we need more rest than anyone else and if we don't have it we get sicker -- it's important to keep talking about it, so we can start, or keep on, doing it.

In your second post you describe the half life that is so much a part of this illness. My son at almost 23 has been there for a number of years. I was there, but have been able to emerge.

I still do most things slower than the average person, slower than I did before illness. A neighbour told me once that when she and her husband would go for their fast-paced walks, they would occasionally see me also out for a walk. (This was during a time when I was exercising 45 min. a day and taking two 45 min. walks daily with no problem, a few years ago. I am not up to that at present.)

She described my pace as "leisurely". She hadn't known that I was sick. Now that I had told her she realized it was not so much leisure as trying to conserve energy.

One of my daughters has always been a high energy person and when she was a teenager, and I was in my worst health, being with her was exhausting. I would have to bow out because I couldn't even think fast enough to keep up with stuff she would tell me about from her day ... let alone do it.

Awesome reply, Jody! I am going to copy your general thoughts from the first half and post them where they are visible. Especially your continuing on with the warrior analogy--going from a warrior to a wise soldier. I also definitely relate to the feeling of being disgusted with my body for not functioning well. It is challenging to learn that we can't replace what is real with wishful thinking, but need to accept what is real and "work with that". I won't even say, "Do our best", because that goes into the perfectionism which leads right straight back to discouragement.

It must have been so tough having teenagers and a family when you were struggling so. You are a hero in my mind.

Awesome reply, Jody! I am going to copy your general thoughts from the first half and post them where they are visible. Especially your continuing on with the warrior analogy--going from a warrior to a wise soldier. I also definitely relate to the feeling of being disgusted with my body for not functioning well. It is challenging to learn that we can't replace what is real with wishful thinking, but need to accept what is real and "work with that". I won't even say, "Do our best", because that goes into the perfectionism which leads right straight back to discouragement.

It must have been so tough having teenagers and a family when you were struggling so. You are a hero in my mind.

Sing

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Well ... thanks. I'm glad it struck a chord for you. I'm touched.

It was tough having kids around in some ways. In other ways they were like a rope to hang onto, preventing me from slipping further down. They were company without having to go out (which i could not have done) and their energy and youthful optimism rubbed off on me somewhat as well. Of course they also were exhausting. But that's kids for ya.

Congrats, you do have a sense for comedy. Your article made me laugh out loud although we all know there's nothing funny about being a prisoner of our own body. I don't know how long I can still accept the fact my body is not getting better. I'm very lucky however. Years ago I was even unable to turn myself around in my bed or walk to the bathroom next door. I can drive a car now and type this message. Things have improved. And still there is the invisible wall, the damage inside that sets our limits. I listen to my body, don't push till it crashes, sleep when I feel like. I put the clock not to ruin my nights. But I don't know if I can live this life for the rest of my life.

Jody, I know what you mean with the kids.....they gave me love, laughter, and a sense of purpose. My girls saved my life through those most difficult times. We can endure any how, as long as we have a why.

Your articles are always spot-on, Jody! Thanks for another one. It just really puts life into perspective to read of others' struggles and their moments of success within the struggle.

Back years ago when I was a single mom with two kids at home and a mortgage to stay up with, pacing like this is the only thing that kept me going with working. I would work for an hour or two, then rest, work for an hour or two, then rest. If this is a "real" rhythm, which I'm sure it is, it sure explains a lot. Sure wish I'd kept my business open, but life happens.

Ditto about kids... those years, having kids to get up to and come home to at the end of my work day kept me going. I had to keep up with them. It just goes that way. My motto with teens is listen to them, and make them laugh, every day -- and when it's tough for them, it will be you they talk to. This paid off.

My one regret for that time period is that I didn't really ever tell them I was ill. No one else believed it, so I kept my activity level at a level I could handle without really showing how badly I was hitting a wall occasionally.

Now I'm an empty nester. Life itself seems empty sometimes. I have to agree with the above: We can endure any how and any what, as well, as long as we have a why.

I still do most things slower than the average person, slower than I did before illness.

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I find this as important as the resting. When I first tried pacing, I would go as fast as I could during my active period. I have found that if I move at a moderate pace when I am active, I can do more before I have to stop and rest. Heeding when I need to stop and rest can still be a problem.